03 Feb This is Pam | Lifestyle and Documentary Photography

My parents recently celebrated their 40th anniversary by going on a vacation together—no big deal, right? Except, this time, for the first time in over 20 years, it would be just the two of them, because I would be staying at their house with my sister Pam. After two decades of planning trips with her, they could take a break from being parents, while I attempted, briefly, to fill their shoes.

My sister Pam entered the world one year, one month and two days after me, weighing in at a mere 3lbs 15oz. Her small size was due to a holy trinity of issues: premature labor, Ventricular Septal Defect (a hole in her heart), and an extra copy of chromosome 21, which we know as Down Syndrome. It’s hard for most people (myself included!) to even fathom how hard those first months and years must have been, but this is not a pity party for Pam or for my family. Pam has brightened the lives of everyone she’s met, and she really brought our family together. They say “it takes a village,” and thankfully, we had one. Family members stepped up in amazing ways, and my young parents worked any number of small miracles in order to make life normal, and they succeeded. As kids, we were unaware of the challenges it took to raise Pam. We thought all kids got to hang out with their grandparents and aunts and uncles all the time. One aunt even moved into our house to help out, and I swear I thought it was so she could hang out and watch cartoons with me. As we got older, my sister Krystal and I did our part to help, but we were mostly just her sisters. We knew Pam was “special,” but we were taught to treat her the same as anyone. There was no big production or special rules. No tiptoeing around. No putting life on hold. And so Pam, like us, grew up facing the typical ups and downs of life, while always feeling loved and being surrounded by encouragement.

Consequently, Pam believes she’s famous (maybe we overdid it a little). To be fair, she’s been in the local paper a handful of times, watched herself on the local news once, starred in numerous community center talent shows, and been on the giant screen at Mariner’s stadium dozens of times. She can make a decent case. On the other hand, she thinks performing into a microphone in her bedroom along with her endless list of Disney idols (in her mind Disney isn’t for kids, it’s for rock stars) is just one step away from getting signed by a major record label. Even after sitting through the 10^th rendition of “Let It Go,” with her constant requests for honest feedback on her singing, you can’t help but chuckle at her small vanities and her oversized confidence. Clearly, this girl doesn’t feel ‘less than’ anyone. And why should she? She’s happy. She isn’t mired in self-doubt or self-pity, and she believes in everyone around her just as whole-heartedly as she believes in herself.

As I packed to head across the state, I realized that I hadn’t lived with Pam in over eighteen years. When I left for college, Pam was seventeen, but mentally maybe seven. She was goofy, loveable, and always had a giant, dimpled smile followed by a hug for everyone who walked into the room, even if she’d just seen them an hour before. She’d spend hours watching 80’s movies, like “Sixteen Candles” and “Adventures in Babysitting,” while endlessly writing (mostly gibberish) on hundreds of sheets of lined notebook paper. The repetitiveness seemed to provide comfort, and looking back, it’s clear that this was part of her OCD tendencies, which have become more pronounced as she’s aged. As I moved through my twenties and early thirties, I’d see Pam for holidays or for her annual pilgrimages to Seattle for a Mariners game, but I didn’t know anything about her day-to-day life. And Pam only knew the Christmas-vacation-me and yearly-Mariner’s-game-me, not the left-in-charge-like-a-mom me. I was actually a little anxious about how we’d get along for the next week, but as I drove towards Spokane, I became more and more excited to really meet my sister again.

I pulled up to my parents’ house feeling good and ready for my week with Pam, excited to cheer her on at her Special Olympic track meet and take her on new adventures. I hoped to push her outside of her comfort zone a bit and show her new possibilities and fun. This way she would remember our week together as the time she learned how to do x, y, z…and that her older sister is the coolest. I was living in dreamland. In actuality, I was handed FIVE pages of notes outlining Pam’s very specific daily routines, and as I learned, straying from these routines didn’t earn praise, it instead got a phone call to mom telling on me.

Pam has grown into a young woman who lives and dies by her routine. Part of which, I believe calms her growing OCD. She writes endless lists and only keeps the perfect ones. She needs to lay out each day’s outfits perfectly on the end of her bed, all the right angles, evenly spaced, and arranged in the order of her daily activities. At night, she goes through a bedtime “dance” of shifting pillows, stuffed animals, and covers before crawling into bed—it’s always the same dance, down to which animal she moves first.

Pam’s routine helps her through her days. Her life is guided by bedtimes and wake ups, personal hygiene rituals, food, TV shows, her job, and trips to the ARC where she gets to see her friends. Pam needs these guidelines, and my parents need these guidelines too in order to maintain their own normal lives with an adult child living in their home. You have to understand though, that the five pages of notes left by my mom weren’t just guidelines to Pam.; they were the law, and she knew them forwards and backwards in her head. The notes were just to help me keep up. For example, if it’s 8:30am on Monday and she’s not eating Cheerios in front of the TV downstairs (not in her room or at the dining table, but DOWNSTAIRS) watching “Saved By the Bell,” the world might end. Seriously. Pam needs to follow this routine to a tee and check off each task as she goes along. Deviation is not an option.

I learned this the day I tried to take her bowling. Pam loves to go bowling so when I offered to take her one late morning, I thought she would jump at the chance. I could tell she wanted to go but I could also see that her brain was stuck. She wanted to say yes, but she kept looking at the clock and then back at me and finally said, “but it’s chocolate milk day.” Pam’s routine was telling her that her lunch would be in an hour. It would consist of a perfectly portioned sandwich baggy of small tortilla rounds with mild hot sauce for dipping, another perfectly portioned baggy of turkey and, of course, her treat of all treats, a chocolate milk. (I must note the baggies are a thing because my mom started portioning Pam’s lunch before she left for work to keep her from overeating, but has now led to Pam’s strict rule following to require her to place her food into a baggy first and then onto her plate.) After some negotiations, I promised that she could have her chocolate milk with dinner and I would take her to lunch at Denny’s, one of her all-time favorite restaurants.

Eventually, we made it to the bowling alley where she crushed me. She’s a great bowler and competes every year in the Special Olympics. She also competes in basketball and track and field, but those sports are heavily modified for her skill level, whereas with bowling, she’s just plain good. We had such a great time together, and I chalked this up as a small victory. But while Pam acknowledged that she had fun, she would not, could not drop the fact that I made her miss her lunch. I was starting to understand how important this routine really is for her independence, and for my parents’ sanity, but I was still worried about how ‘set in her ways’ it was making Pam. For this reason, I’ll never stop trying to ever-so-lightly push her beyond these strict and very literal time constraints she’s set for herself.

The Pam of today isn’t all timelines and OCD. Sure, she’s quirky, but she’s also a moody, stubborn (so unlike me), know-it-all… a 36-year-old with the attitude of a teenager. As with every teen’s room, Pam’s is plastered with posters from her favorite boy band, the Jonas Brothers, and somewhat comically, the WWE wrestler Triple H. My dad even took her to a WWE event when they came to town and brought along a huge Triple H sign for her, even though it’s not his cup of tea. Pam never connected with the new generation of wrestlers, but ask her about Triple H and it’s on. Her room is also a shrine to the Seattle Mariners, especially Felix Hernandez. She says she loves them all the same, but she wears a Hernandez shirt on EVERY game day, whether or not he’s pitching. It breaks her heart every time the Mariners lose, but she always tell the players that it’s ok, because they tried their best and she still believes in them.

Like many middle class teenagers, Pam also has a job. She works at a local restaurant. Her responsibilities include cleaning tables, putting away trays, and sweeping. It’s a job that could be done by any employee in five minutes, but the owner has employed her for a couple of hours, three times a week for the past nine years. Lastly, Pam has a BOYFRIEND. He has Down Syndrome too. They go to dances together at the ARC and they always talk on the phone in typical teenage fashion. Their relationship mimics the drama and triumph of their favorite TV shows and movies… sometimes verbatim. It’s ridiculous, and adorable, and tear-inducing all at once.

Pam has grown up so much since I left. She’s still childlike in many ways but she’s also so much more accomplished than I ever thought possible. She amazes me, angers me, and makes me laugh all in the same breath. Even while I’m throwing my hands in the air out of frustration, I’m secretly smiling at the strong-willed person she’s become. Pam did win and will continue to win most of our battles, but I will still keep testing her boundaries when I know it’s good for her. The littlest victories can mean everything. My favorite from my stay was when we went and visited our sister, Krystal, for dinner. She lives an hour away, which meant Pam would miss watching the Mariners game, but I promised we could listen to it on the car radio. She gave me this mouth open, steely-eyed stare that told me in no uncertain terms that I was ruining her life, but she would go because she loved Krystal, and I wasn’t really giving her a choice.

After a lovely visit, I put the game on for the drive back home and instead of listening to it with me, Pam plugged her headphones into her iPad to listen to her own music, asking me to keep her updated on the score. Her routine on long car rides is that she listens to her own music, period. Smiling while I clenched the steering wheel, I asked her to take off her headphones and give it a chance. With a giant sigh, and some muttering about how MOM would have let her listen to her music, Pam gave in and listened to the game. It only took five minutes before she was giving me a play-by-play (as if I couldn’t hear it from the announcers). She was so hooked that when we pulled into the driveway, she didn’t want to get out of the car until we heard the final two outs. There we were, in the dark, in the driveway, breaking Pam’s rules and cheering our team together.